Monthly Archives: January 2007

Mary Briggs, who suffers from a rare disease known as chiari 1 malformation, wants to find others like her so they can talk and share information.

Talk brings reliefSupport groups help people cope with illness, but it can be difficult to find or start oneBy Tracy WheelerBeacon Journal medical writer

If she had diabetes, or heart disease, or weight-loss surgery, Mary Briggs would know where to turn for support.

All those conditions — and many others — have their own local support groups; in most cases, more than one. But Briggs’ condition? Nothing.

“I just need to talk to somebody,” said the Springfield Township woman. “Everybody has a support group but my disease.”

Her disease is chiari 1 malformation, a little-known structural defect of the cerebellum, the part of the brain that controls balance.

The difficulties of chiari (pronounced key-ARE-ee) go far beyond balance and dizziness, though, as a lack of space at the base of the skull pushes the cerebellum and brain stem into the upper spinal canal, placing pressure on the spinal cord.

For Briggs, 39, the dizziness progressed to strokelike numbness on the left side of her body, indescribably severe headaches, leg weakness and, now, constant, debilitating pain that even five medications a day can’t tame.

And that doesn’t take into account the anxiety that comes from misdiagnoses; from being told in the emergency room that the CT scan doesn’t show anything, so go home; from having your pillow wet with leaking spinal fluid after surgery.

If only she could talk to others who had already been through all of that, “it would probably make it easier to deal with,” Briggs said. “You could say, `Hey, I’ve been through that and this is what I did,’ or `This is what happened to me.’

“But I don’t know how to go about starting a support group. It takes more than one.”

Certainly, Briggs isn’t the only one who feels this way. Despite long lists of support groups offered by local hospitals and community organizations — everything from depression to grief to attention deficit disorder to a whole host of cancers — there are still many diseases that have no outlet.

Forming a group

Karen McCann, of Marion, was once in Briggs’ situation, until she decided she would start a support group of her own after being diagnosed with chiari in 1999.

Even less was known about the disease eight years ago, so instead of trying to start a chiari-centered support group, she broadened the scope to include anyone with chronic pain.

“If you have chronic pain, it doesn’t matter what you have. You still have to deal with constant pain.”

And as it turned out, two of those who signed up happened to have chiari.

McCann started by placing an ad in the local newspaper and then being interviewed on a radio station morning program. She talked to doctors, psychiatrists and counselors, asking them to spread the word and hand out brochures.

Eight years later, the support group is still intact, attracting people with rheumatoid arthritis, fibromyalgia, back surgery, Reflex Sympathetic Dystrophy Syndrome and other pain-related disorders. The group invites doctors to speak, holds roundtables and discusses everything from coping mechanisms to filing for disability.

“Having the support of other people who have to deal with chronic pain is very beneficial,” McCann said. “Talking about it and getting it out, rather than keeping it in, keeps you from getting depressed — and I was depressed when I started the group.

“People around you try to understand, but in all honesty, they don’t. The only people who know are those who experience it themselves.”

Benefits of a group

Research has found that belonging to a group and talking to others with common problems can alleviate mental stress, making treatments more effective.

But starting a support group from scratch is a very difficult proposition. Even Mary Beth Husseini, a mental health clinical nurse specialist at Akron General Medical Center, finds it tough, and she has the built-in support of a hospital staff and marketing.

Sometimes, even ideas that seem like a slam-dunk fail to attract participants. At a previous job, Husseini tried to start a support group for women whose husbands were cheating on them online. She did several interviews on Cleveland TV. She was invited to an international symposium. But the support group wasn’t able to establish itself for long.

Add a chronic disease to all of that, and the goal of starting a group becomes even tougher.

“That’s a lot of legwork if you’re not feeling well,” Husseini said.

For some people with rare diseases, the Internet may offer support through national or international organizations devoted to those diseases. Chiari, for example, has a Web site called http://www.conquerchiari.org, with an active e-mail discussion group offering support and encouragement.

Briggs, though, needs more.

“The Internet, I don’t trust it,” she said. “I can tell by looking at you, by listening to you, if you’ve been through what I’ve been through. I need to be able to see you.”

One important source in starting a local support group may be your doctor, said Dr. Robert Flora, vice president of the medical staff at Summa Health System.

“If it’s something real rare,” he said, “the doctor can say, `Hey, we have a patient with this, we can call her and see if she’s interested in this.’ We can broker that kind of meeting.

“We’ve run into situations like this. Even our interstitial cystitis support group, it wasn’t started in Akron until one of our patients started it.”

Not all doctors will be so helpful, though. The office staff has little free time, Husseini said, and many medical offices are paranoid about violating HIPAA, the federal Health Insurance Portability and Accountability Act that maintains medical privacy.

Starting tips

McCann suggests the following steps in starting a support group:

• Give your group a name: Giving the group a title sounds professional and enables the public to identify the group in advertising. McCann chose the name Marion Area Chronic Pain Group for her group.

• Find a location: Many places are willing to donate a room for such a group. Check hospitals, churches, city halls and libraries for a conference room that might be available.

• Decide on the date and time: Before publicizing the group, set a weekly day and time that your group will be able to meet, making sure the schedule suits the facility you’ll be using.

Briggs is hoping a local chiari support group can be born soon. She needs it. And she believes her husband, Tom, needs it.

Though Tom has been extremely supportive by taking over all the household chores and boosting her emotionally, there’s only so much he can truly understand about how she feels. Plus, she said, he’s now forced to carry an unfair burden in the marriage.

“I know this is hard on him,” she said. “It’s hard on me. I used to be a very independent person. This disease has taken many things from me.”Anyone interested in forming a support group with Briggs can contact reporter Tracy Wheeler at tawheeler@thebeaconjournal.com or 330-996-3721.

Randy Wallen, right, and his wife, Virginia Wallen, in their Visalia home. The Wallens have thrown a Christmas party at the Visalia Nursing and Rehabilitation Center for the past 17 years. They couldn’t do it this last year because Randy was being treated for bone and lung cancer, but community members came together and helped them with the party

For the past 12 years, Randy and Virginia Wallen have been making the holiday season bright for the residents of the Visalia Nursing and Rehabilitation Center by throwing a Christmas party.

But this Christmas season, that party almost didn’t happen. Randy Wallen, 68, was diagnosed with bone and lung cancer on Nov. 23. Virginia Wallen, 62, couldn’t handle the party planning and community gift donations alone because she suffers from reflex sympathetic dystrophy in her arms and hands.

The condition causes the nerves to misfire and sends constant pain signals to the brain. Any extra energy she had was focused on her husband.

“All I’ve had on my mind the last few months is taking care of him,” Virginia Wallen said.

When the staff at Visalia Nursing heard, there was no way they were going to let a year go by without a Christmas party for residents, said Kim Cribbs, activity director for the center.

“When I found out [about Randy Wallen’s illness], I said ‘We have to still have a party,’ ” Cribbs said.

Every year, the Wallens have called on the community to donate items for the residents of the long-term care facility.

They weren’t asking for anything extravagant, just every day items residents may need — an extra pair of warm pants or a package of crackers for a snack.

“They get $35 a month to take care of their personal needs,” Randy Wallen said.

In past years, the donations were dropped off at the Wallen’s Visalia home, where the couple wrapped the gifts before delivering them to Visalia Nursing.

This year was different. Randy Wallen went to Kaweah Delta Hospital’s emergency room on Nov. 21, after breaking his hip while visiting his sister’s Visalia home.

He said it snapped in two places and his sister needed to call an ambulance.

“I’ve never seen anyone in that much pain,” Virginia Wallen said.

The next day Randy Wallen had surgery. Doctors put a long steel rod in his leg to help it heal.

The day after the surgery, he was diagnosed with the bone cancer in his hip and with lung cancer.

Randy Wallen stayed in the hospital for days undergoing physical therapy, so he couldn’t take donations or help plan the Christmas party, he said.

The planning and execution fell to Cribbs, who took donations at the nursing home and got the residents prepared for the party. Some of the residents don’t remember the previous years’ parties, but that doesn’t stop them from looking forward to it when they are reminded.

“Once we start letting them know about it, they get excited,” Cribbs said.

Even though the Wallens could not help plan this year’s party, when Dec. 20 came around, they were not going to miss it.

“I was going to go even if I had to go in a wheelchair,” Randy Wallen said.

And he did.

The Wallens don’t just visit Visalia Nursing once a year for the Christmas party, they perform on Wednesdays with a singing group from The Free Will Baptist Church in Farmersville.

They also bring children from the Mineral King Elementary School, where Virginia Wallen volunteers, to sing for residents. Virginia Wallen said she loves children, and she shows it partly by writing children’s books involving children with disabilities. Her third book is due out any day, she said.

Randy Wallen has been staying at home since mid-December, receiving treatment for his cancer and letting his hip heal.

He isn’t letting the illness get his spirits down.

Physical therapists have told Randy Wallen he is making rapid progress toward walking without assistance, considering how bad his break was.

While the Wallens are concentrating on Randy’s recuperation, they miss singing at Visalia Nursing and Kaweah Manor Convalescent Hospital and Westgate Gardens Convalescent center, two other nursing homes in Visalia at which they frequently volunteer.

And the residents miss the Wallens.

“Even one of our residents who is not that alert,” perks up after staff reminds the residents it is Wednesday and the Wallens are coming to sing, Cribbs said.

If the miniature mummy in the window doesn’t grab your attention, then the massive sculpture made of 1,118 wood chips in the middle of BoxHeart Expressions gallery in Bloomfield most certainly will.

The wood-chip sculpture is by Bruce Sykes, who lives near Indiana, Pa., but the mummy is by Alberto Almarza, of Chile. They are just two of 22 artists from 10 countries chosen for inclusion in BoxHeart’s sixth annual exhibition, “Art Inter/National: Here and Abroad.”

Having been included in more than a dozen Web site listings of exhibition opportunities for artists from all over the world, this iteration of the international competition netted entries by 77 artists from around the globe, more than ever before.

But quantity doesn’t equal quality, says Josh Hogan and Nicole Capozzi, co-owners of BoxHeart Expressions. So this year, even though three more countries are represented than last year, there are fewer works by fewer artists.

The reason is simple, Capozzi says: “We just try to pick the works that we think will make the best show. There are some entries that are great, but they just don’t fit with the other things that we selected based on certain themes.”

Although there is not one overriding theme to the exhibition, it is a cohesive show with works seeming to flow from one to the other, either stylistically or thematically. Even the works in the window — such as the aforementioned mummy, as unusual as it is — don’t seem out of place flanked by watercolor and charcoal portraits of gaunt prepubescent children by Ohio artist Diane Fleisch-Hughes.

This is a juried exhibition, however, with the best-of-show winner being awarded a solo exhibit that follows the next “Art Inter/National.” Which means that next month, visitors to the gallery will find on display the work of German artist Petra Voegtle, last year’s best-of-show winner.

This year’s winner is New York fiber artist Elin Waterston, who is represented here in three small quilts that combine imagery of birds and butterflies with various fabric swatches and quilting techniques.

Voegtle is represented in this show, too. Also a fiber artist, she shows in two silk paintings from her “Magic Landscape” series how magic exists and surrounds us everywhere. Through the delicate representation of desert and cave, respectively, “Dryland” and “Underworld” give the impression that every space is sacred, fragile and delicate.

Voegtle is not the only previous winner included in the exhibition. Reinhardt Sobye, of Norway, was last year’s first-place winner. Two large-scale digital prints — “Dreamscape I” and “Dreamscape II” — show how living among Norwegian fjords, which are scarcely populated, increases the feeling of an approaching apocalyptic future. Both combine dramatic landscape photographs with ethereal villages superimposed on them — in essence, depicting the human footprint in diabolical opposition to the Earth’s natural beauty.

Whereas Sobye presents man’s advancement at the cost of ecological devastation, Russian artist Victoria Goro-Rapoport prefers to deal with man’s desire to build utopia, particularly as it fits within the context of the failed utopian vision that was communist Russia. Classically themed, her two large-scale etchings on display here — “Sinking of the Empire” and “Stepping Out” — combine architectural renderings and classical representations of the human figure into idealistic yet self-destructive models of work and progress.

Not all of the artists in the exhibition harbor such worldly views. Looking inward, Philadelphia artist Gerard DiFalco focuses on the inner self, particularly as it relates to the field of phenomenology.

DiFalco suffers from RSDS, a disturbance in the sympathetic nervous system that affects the hands and feet. Thus, in his four-paneled mixed-media piece “The Seasons of the Minotaur,” he depicts himself as a minotaur suffering from different forces yet striving to maintain balance, particularly as it relates to the visual versus the conceptual and the physical in contrast to the cerebral. In essence, using his own art is a form of healing, orchestrating both the left and right hemispheres of the brain in the process of creation.

Not all works are as deep. Italian artist Franco Meloni’s vibrant acrylic painting “Estia” depicts a jester-like character in expressive color; Ohio artist Dan Gerdeman’s two small comical paintings, “Imprint: Gordon Light Foot” and “Remember to Remember Me,” present a lighthearted look at life in a large family; and Christiane Middendorf’s three abstract paintings, “Bird,” “Bassisstation” and “Samenkorn I,” reflect the golden glow of her vibrant native city of Berlin.

All in all, this show is a tour de force of international talent and a welcomed addition to a city that already boasts one of the world’s most well-respected international art exhibitions, the triennial Carnegie International. At least with this exhibition, locals get to see international art once a year. But you’d better be quick, since the show will end Feb. 3.

Elephantiasis is an ugly condition, which disfigures and disables about a 120 million people globally.

It produces huge, unsightly swellings on the limbs, and in some cases the genital area.

People with the condition can find their lives are ruined. Many cannot walk, or work and some become social pariahs simply because of the way they look.

Parasitic worm

Overwhelmingly, elephantiasis affects people in tropical countries, but Trudy Lapinskis is a rare example of somebody who has never been to a tropical clime, and yet is afflicted by the condition.

In tropical countries elephantiasis is usually a symptom of a disease called Lymphatic Filariasis.

This is caused by a parasitic worm which breaks down the body’s lymphatic system.

Trudy does not have lymphatic filariasis. Her elephantiasis is the result of an infection which is thought to have set in after a minor accident.

She banged her back on a table and developed complex regional pain syndrome (or reflex sympathy dystrophy RSD) – a chronic pain syndrome that is notoriously difficult to diagnose and treat.

The intense pain spread to other parts of her body, affecting the skin, bones, circulatory and neurological system.

She went from doctor to doctor for help. One medic lanced a swelling on her foot, an infection set in and Trudy’s condition worsened into elephantiasis.

“My foot then swelled into gigantic proportions”.

Her leg became so swollen and infected that she was unable to walk and the doctor treating her, describes her case as the worst she has ever seen.

From being a fit and active dance enthusiast Trudy, 45, from Peterborough, is now confined to a wheelchair.

Her leg has had to be amputated as the infection in her leg threatened her life, but now the elephantiasis has spread to her other leg and arms and she still feels the phantom pain in her amputated limb.

Chronic pain

“There is no doubt it is elephantiasis,” she said.

“People say to me that you have to go to certain countries for it to be elephantiasis. In those cases a parasite breaks down their lymphatic system, but my lymphatic system has also broken down.

“I want people to know that you don’t have to go there to be affected.

“I don’t know of anybody else in the UK with it, but there are some people in America so I went there to see a doctor for help.”

“I am in terrible pain 24/7. It is the most chronic pain.

“According to the McGill pain index, arthritis has a pain rating of 18, a fracture 19, cancer 26, chronic back pain 27 while incredibly RSD has a rating of 42.

“And my condition is getting worse and worse.”

Trudy said she is stoic about her condition, concentrating on the positives such as her poetry, but she said she can’t help but be affected by people’s reaction to her deformities.

“I do try and ignore people when they stare, but there was one group of people in a London hospital who really upset me.

“They started laughing and saying things and that did make me cry.

“There is a lack of awareness about the condition RSD.

“I don’t want to scare people but it can in very rare cases develop into elephantiasis.”

‘Unusual case’

Dr Joan Hester, consultant in pain management at King’s College Hospital, London, who currently treats Trudy confirmed that hers was a most unusual case.

“I have not known anybody else develop the same condition as this in England.

“RSD does not usually become so severe or develop like this.”

Dr Hester said Trudy’s case had become so bad because she developed a low grade infection caused by the lancing of the swelling.

We report a case of a patient developing complex regional painsyndrome of the upper limb after a laceration injury with glass.The pain in his hand was resistant to all conventional modesof treatment. The pain reduced dramatically after a diagnosticlidocaine infusion and the reduction in pain lasted for 3 days.Following this the patient responded well to lidoderm 5% patchesand achieved 80% pain relief with an improved range of movementin his hand.

Kathy Kasey Got Hurt Working At Home Depot And The Store Is Skimping On Medical Treatment. Proposed Fixes To Workers’ Comp Law Won’t Be Enough.January 18, 2007By Meir Rinde

Home Depot worker Kathy Kasey was moving a washing machine for a customer one day a year and a half ago when she twisted her foot badly. Kasey, who was 59, didn’t worry too much about it. She thought if she went home and rested her feet she’d be okay.

“Sometimes you’ll twist your foot funny and you’ll get a horrible pain, but it goes away in an hour or so,” said Kasey, who worked at the Home Depot in Wallingford. “But it didn’t go away.”

The store sent her to its favored local clinic, which diagnosed a twisted ankle. After a week she got crutches, and then physical therapy, but she says the clinic doctor never even touched her foot, and Home Depot’s insurance company wouldn’t let her visit an orthopedist. Her leg remained swollen, but even so she kept working, dragging herself along the store’s long corridors.

It turned out she had a fracture. But it wasn’t until almost a year after she first hurt herself — a year of fighting with the insurance company, of shuttling back and forth to workers’ compensation hearings — that she finally got extensive surgery, surgery that was “much more” than what she would have needed if she’d gotten proper treatment from the start, she says. Then the insurer balked at paying for a home health aide, even though she was immobilized and lives alone, she said.

In a statement, the Home Depot said state law allows it to give employees a list of doctors from which they may choose, and it defended its decision-making processes, saying, “Request for surgery is subject to utilization review, not dissimilar to requests made through one’s personal health insurance plans for surgery related to non-work related injuries.”

Workers’ compensation does reportedly help many people. At a legislative committee meeting last week, Workers’ Compensation Commission Chairman John Mastropietro said there were more than 53,000 claims in Connecticut last year, 90 percent of which were handled without the state even getting involved.

But that still leaves thousands of claims that involve some kind of dispute every year, including many where workers feel like they’re victims of a system that allows employers and insurers to harass them, to accuse them of lying about their injuries, and to throw up obstacles to proper treatment, all in the name of saving money.

“They feel like they’re being laid siege to by the other side,” Rep. James O’Rourke told Mastropietro at the January 9 meeting. “How often can they be called back for medical reviews and surveilled and dragged back to continued hearings, on and on?”

Sen. Edith Prague said she wants to make some changes in workers’ compensation law, requiring employers to tell workers about paperwork they should file, and allowing commissioners to order payments for a longer period to injured people. Prague also wants a bigger penalty for insurers who won’t pay up.

It’s unclear whether those changes would help someone like Kathy Kasey, however. The goal of commission hearings is often to tell an insurer it should pay for a treatment, without going as far as a legal order, but as the hearings drag on for weeks, workers can remain undertreated, unemployed and financially vulnerable. Yet when O’Rourke asked Mastropietro whether he needed more power to require payments, he demurred.

“Those are policy decisions where you’re going to have to weigh what we need to do to meet our obligations to injured workers, versus what we need to do to make certain that our employers remain competitive so that they can continue to provide the jobs for these people,” Mastropietro said.

One of the ironies of the workers’ compensation mess is that many companies make concerted efforts to hire more older workers, in part by offering health benefits. Kasey said she found the Home Depot job attractive, after 30 years of earning higher wages as a bartender, in part because it offered health insurance.

She’d spent years in jobs where she had to hoist kegs and break up fights, so she didn’t mind moving washing machines. “Yeah, I’m older, not that I like to think about it,” she said. “I realize I probably can’t do a lot of the things I think I can.”

Labor studies show that, while older employees are hurt less often, when they are injured they heal more slowly and take longer to return to work. At the same time, employers want their insurance companies to keep down workers’ compensation costs, in part by getting employees to return to work as soon as possible.

Home Depot denied it pressures doctors to certify workers as healed. “The associate’s doctor is the sole determiner of whether or not an associate is medically able to perform transitional work,” the company said.

In November, after Kasey’s doctor reported that she was, theoretically, well enough to return to light duty work, Home Depot told her they didn’t have any light duty positions open, and since she was no longer exempt from working, they terminated her.

Her worker’s comp is running out, she’s about to lose her regular health insurance and says she can’t afford to extend it via COBRA. Her house is on the market; if it doesn’t sell by March, she could lose it, she said.

But she expects to reach “maximal medical improvement” in June. She may be fully employable again, and the letter she got informing her she was terminated said she could always reapply for a job with Home Depot.

Bagging a trophy white-tailed deer is a happy occasion for almost any hunter, but bagging a monster buck this season had special meaning for Norman Huddleston of Azle.

And it wasn’t special just because Huddleston shot the second-largest non-typical buck on record from Texas — “the buck of a lifetime,” he said.

“What makes it a better story is that, for me, walking is a challenge,” said Huddleston, who suffers from a disease called reflex sympathetic dystrophy. “I suffer from an extreme case of RSD of the right lower leg. The ranch I hunted treated me like a king and made sure that all of my special needs were taken care of.”

Huddleston was hunting Nov. 14 on the Cypress Creek Ranch near Kerrville with H&H Hunting outfitter Michael Hendrick of Santo when he bagged a 22-point non-typical buck that had two big drop tines. Under the Boone and Crockett Club world records scoring system, Huddleston’s buck scored 248 1/8 points.

The record non-typical Texas buck scored 264 5/8 and was taken by Matthew Romero on the Deep Creek Ranch in Coryell County in 2005-06.

Huddleston’s buck had a 25 4/8 -inch inside spread and field dressed at 155 pounds.

Huddleston shot his buck on the Kerr County ranch from a blind that had been set near a food plot in a county where the deer were just beginning the rutting season.

“There were some does and small bucks in the food plot that had a corn feeder at the other end when the big buck came out,” Hendrick said. “The buck was about 250 yards away from the other deer when he came out of the woods. The buck stepped out and then came on a dead-out run and ran all of the smaller bucks out of the field. Then the big buck caught Huddleston’s scent and started to leave, but Norman got him as he was heading out. He made about a 75-yard shot.

“Norman is an exceptional person. His outlook on life and everything else is an inspiration to everyone he is around.”

Huddleston’s buck was taken to the Los Cazadores Deer Contest in Pearsall, where Larry Weishun, an official Boone and Crockett scorer, measured the antlers.

The buck not only topped the Los Cazadores “high fence division,” but it also won the Muy Grande Big Deer Contest in Freer in Duval County.

“Lionel Garza [founder of the Muy Grande contest] told me it shattered the all-time record for a non-typical in his contest that has stood for almost 10 years,” Hendrick said.

Despite drought conditions during the spring and early summer, when antler growth was in progress, several bucks carrying trophy racks were bagged this season, including:

The third-highest non-typical score ever (240 1/8 ), on a buck taken by Krista Andrews in La Salle County.

The largest reported inside spread (31 3/8 inches), on a 10-point deer taken by Mark Barrett in Webb County.

The heaviest field dressed weight of a buck (211 pounds), on a buck taken by Alan Karotkin in Dimmit County.

What is RSD?

Reflex sympathetic dystrophy is a chronic and progressive neurological condition that affects skin, muscles, joints and bones. It often causes severe and relentless pain for the 200,000 to 1.2 million Americans who have it.. RSD is best described as a malfunction of part of the nervous system, often after an injury. Nerves misfire, sending constant pain signals to the brain. Some other facts:

It usually develops after surgery or in an injured limb, such as a broken leg. However, many cases involve only a minor injury, such as a sprain. In 10-20 percent of cases, no precipitating event can be identified. The condition appears after 1 percent to 2 percent of bone fractures.